Monday, March 5, 2012

hey guess what

I was featured on the blog, this little Miggy stayed home. Miggy does a weekly spotlight on Mom's of kids with special needs. I have loved her blog for a while now and am so honored to be on it. Go here to read my spotlight. And if you have the time read all the spotlights. There are some amazing spotlights of some strong Women(and even stronger kids). Thanks again Miggy.

12 comments:

I just wanted to let you know that I've been following your blog for a little while now, and I saw your spotlight on Miggy's blog. I think you and you family are amazing, strong, and inspiring people, thanks for sharing your story.

Go Ruthie! That is awesome! I heard from my mom through Aunt Sharon about all the things you do.. you are my super hero! AMAZING! Thanks for being so willing to share your story.. whether you realize it or not, you are an inspiration! Much love!

Ok, I'm going to suck it up and tell you something really strange. I've been reading your blog since Davy was born and I love it. I heard about you through Cjane's blog.Anyway, last week I had surgery and the dr prescribed me Vicodin and Ambien for a few days (I've never taken either one before.) Every night that I've been on these meds, which is 4 nights now, I've had dreams that my family is visiting your family at your home, my boys playing with your boys. Every darn night! Since you don't know me, it sounds creepy, but I assure you I'm harmless- a teacher even : )I just thought that maybe if I tell you this, I'd stop having these dreams. So there you have it.Thanks for listening/reading : )

Hi Ruth,What an inspiration you are!!! I am a friend of Amber's. We were in Omaha together and we used to swap babysitting. Eliza was such a cute baby. Anyway she metioned you on her blog and I check in once in awhile. I thought of you a couple of weeks ago when I was at a Colin Raye concert for Valentine's day. One of the guys had requested a song for his sister-in-law who has a daughter with Angleman's. (She also would be great to have a spotlight on) I thought you might like the song. It is "She's with Me" You can goggle it, but be prepared with tissues. He wrote it about his granddaughter.

I read your spotlight on Miggy's blog, and saw that you are local! :) I have an 8 year old daughter with an undiagnosed mitochondrial/genetic disorder who was a patient at CHOC until last year when we switched to UCLA. It's not often that I find local moms "who get it". It's nice to meet you! :)

Thanks for the introduction to Miggy's blog! I have only read your spotlight so far, and loved it! Had just gotten home today from the wee one's high risk appt, where we were referred to a geneticist, so I was feeling a little...blecch. Your comment on the smarter the doctor, the less social skills they have made me giggle!

Davy's medical History

I am "the mom" to 3 boys and a little girl. Through taking a microarray test, we found out that my Davy girl has a rare chromosome deletion. I have written this out in hopes to find others who have any similiar conditions.

Davy has a microdeletion of 1p31.1-1p31.3. She has panhypopituitarism, a cleft lip and palate, Congenital heart defects(asd, vsd, pda and had a CoArc). She had a surgery for malrotation of the intestines, and a g-tube put in to feed her. She has GERD with esophagitis dysphagia. She is on multiple medictions that need to be given round the clock. Three of those she will need for the rest of her life. To read about her journey start here.